Teens Speak Up! is a program that provides an opportunity for teens with epilepsy and their parents to visit the nation’s capital, receive advocacy training, meet with their legislators, and tell their personal stories. Teens Speak Up! is part of the Epilepsy Foundation’s Public Policy Institute.
Teens from across the country are nominated by affiliates and selected by the Foundation to participate in the program. After receiving training at TSU, each teen is asked to turn that training into action in their respective home districts through our Year of Service program. Contact our office if you are interested in becoming an Epilepsy Teen Advocate!
Hawaii’s 2015 Teen Advocate: Sydney Baron
First Time Hawaii Teen Selected for Epilepsy Public Policy Institute in D.C.
Sydney Baron, a senior at Campbell High School, has been selected to participate in the Epilepsy Foundation’s Teens Speak Up Institute. Sydney will travel to D.C. from April 10th-14th to participate in a public policy conference where she will prepare for meetings with Hawaii’s senate and congressional representatives on behalf of the 1 in 26 people in Hawaii who will develop epilepsy at some point in their lifetime.
This is the first time a Hawaii resident has been selected for the Institute. Sydney will join teens from across the U.S. for Epilepsy Day on the Hill to advocate for policies that will improve patient access to medications and treatment as well as increased funding for epilepsy programs and research. She will also participate in the National Walk for Epilepsy while in D.C.
Sydney has not let epilepsy or learning disabilities she experienced at a young age stop her from reaching her goals. She volunteers regularly with Epilepsy Foundation of Hawaii and is a member of her school’s HOSA, LEO, National Honor Society and Interact Club. She was recently accepted to University of Nevada, Las Vegas.
“I’m excited to be the first teen ever, from Hawaii, chosen to speak at the Teens Speak Up Institute.” Said Sydney Baron. “Hopefully, by speaking with the legislature, my insight and voice will bring awareness and assistance to a much needed cause.” The community can support Sydney’s upcoming advocacy trip through the Epilepsy Foundation of Hawaii’s online fundraising platform: https://sna.etapestry.com/fundraiser/EpilepsyFoundationofHawaii/sydney/.
When a person has two or more unprovoked seizures, they have epilepsy, which affects nearly three million people in the United States and 65 million people worldwide. This year, another 200,000 people in our country will be diagnosed with epilepsy. Despite all available treatments, 30 to 40 percent of people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control.
About the Epilepsy Foundation of Hawaii
The Epilepsy Foundation of Hawaii has been leading the fight against epilepsy since 1971. The Foundation’s mission is to stop seizures and Sudden Unexpected Death in Epilepsy (SUDEP), find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.